All you need is....follow through!

Here in New Zealand we have our General Election tomorrow.
There are a lot of issues on the table for us all to consider and, of course, a lot of promises have been made by politicians.

But one thing which, it strikes me as having been a problem here for a very long time, is nowhere to be seen.
It stands at the heart of so many of the issues affecting the country, the systems, us all.
And that is - follow through.

There largely seems to be none at all and where it does chance to happen it's usually due to other factors forcing it to occur.

On a nationwide scale - it doesn't matter what side of the argument you are on with regard to National Standards (a new assessment tool here). The major, underpinning flaw is they funded the implementation so finally we (as parents) have a clearer picture of our children's achievement but not any remedial help for those identified as failing.
Follow through people??


They introduced a 'developmental' check for 4 and a bit year olds to try and identify issues before they started school. But the vast majority of 'assessors' are simply Plunket nurses picking up an extra string to their bow but, in my and anecdotal experience, many have very little knowledge on which to base their assessments eg the Plunket nurse who told me - and wrote in W's book - that he was meeting all milestones even though she also wrote down he was getting Early Intervention help at the time. He'd qualified for OT and physio help because he wasn't meeting milestones!
This system has been put into place as a crude screening tool and then concerns are referred on to experts - but the experts are under-funded anyway and thanks to the surge in possible referrals the wait is now around 18 months in our town. Since that'd take a kid to nearly 6 years old the whole 'before school' thing sort of gets lost...      Where's the follow through?

We have a horrible record for child abuse in this country. I'm not sure of the current stats but we'd have over 100 kids die each year due to child abuse.
There was a case recently where our Child Protection people knew of issues with a family and were actually trying to remove a child from the family's 'care'. However, somewhere along the way they 'lost' the family and couldn't find the kid. They couldn't find it, until it turned up in a hospital with brain injuries and later died.
Where's the follow through on that?

Some people will know my vehement view that if we are going to have good neonatal care in this country then we also have to have extra funding for Early Intervention, special education, extra health needs and so on. If we are going to spend the money on the babies then we have to follow through and spend the money on the children they grow into. Hopefully if we spend the money on the children they grow into then we won't need to follow through and spend so much money on the adults he children grow into.
This is particularly so for those moderately and mildly premature children who, with a smaller, less intenvsive or at least less prolonged hand can streak on past or round their roadblocks. These are the kids where there is never a debate about giving them the NICU care in the first place and so they, and their parents, always have to carry the can.

We had a discussion with the kids' surgeon about N and how his eating and formula volumes are a large part of what's holding him back from school. One of the things that was thrown about was that it's unethical to do something for the child just because another system won't be flexible enough for him.
Actually, I feel what's unethical is the fact that so much money was spent keeping his brain in a good state in the NICU, supporting him as a baby, keeping him alive when he wound up in the ICU at 6 months old, giving him some Early Intervention when he needed it and now we run into roadblocks trying to get him to school and a suitable education for that brain to use, grow, develop and actually do something with!
Again - follow through?

And on a much smaller scale - T was getting SLT when he was littler. Due to the vagaries of the system he had to have a hearing test, then go on a waiting list to be assessed to see if he'd qualify for SLT and if so then join the next waiting list to actually get therapy. So I duly did the hearing test - quite a mission it was too! Then I got a letter saying we hadn't shown up for the appointment! Since we'd been there for over an hour and seen two audiologists in the end I wrote a strongly worded letter to the hospital and asked for a copy of the results to be sent to me as well as the GP. If  I didn't have the report when the SLT came then they wouldn't do the initial assessment. So I got the report just in the nick of time for T's assessment which I refused to miss because the hospital couldn't organise itself as we'd waited over 6 months to get to that point.
T qualified and 3 months later started therapy. The therapist left but did a good handover to the next one. She was often sick and then disappeared. We later got a letter saying she'd quit and as T had had over 6 months of therapy he would go to the bottom of the waiting list again. We rang and complained that actually he'd been on the books for 6 months but had only had about 6 sessions due to illnesses/cancelled appointments and had already been nearly 2 months without therapy and we didn't want him to go to the bottom of the list again. They checked their records and confirmed what we'd said and as soon as they appointed someone T re-started therapy.

But again it's the lack of follow through. It shouldn't have been up to the parent to keep records, keep on top of things and events and appointments. They have records too and they should have checked before sending out letter dumping kids.

Things are fragmented. I'm sure they are in every system really.
But follow through seems to be hugely lacking here - and would make the systems work so much better with very little extra effort. Those who are employed to keep track of the people ought to do it not just cross their fingers and hope for the best. The funding needs to be there for the systems to actually work - not just put half a process in and hope.

What this country needs - is follow through!

"Just a cold"

I dream of that day arriving - the day when a cold is 'just a cold'.
It's been about 13 years since I didn't regard the onset of a cold for one of the kids with dread.

My last post was all about long term fall out of being a late pre-term child. That was developmental stuff which has such a far reaching effect through their lives.
But there's another spanner my guys, and many other prem kids like to throw into the works, especially when they are working hard to thrive.

When they get sick they fall fast and hard.

When the boys were all younger a cold meant not just a nasty case of snuffles but usually croup, chest and ear infections, antibiotics, reflux flare up and the resulting weight loss which usually meant about 3 months hard work to get them back to where they were pre-cold.
Things aren't quite so bad these days - for a starter thanks to the wonders of surgery none of them reflux any more!

Whenever N gets sick his eating goes to hell in a handcart and if he's already going through one of his extreme non-eating binges then it happens really fast. Last time T got sick we were lucky to keep him out of hospital and it was really only thanks to his gastrostomy tube and feeding pump that we were able to keep it running really slowly and almost constantly and so kept him hydrated. Big achievement that time as I kept the weight loss contained to only half a kg!

T's doing really well lately and so you can imagine my dismay when he started to sound snuffly recently.
Normally I immediately swing in supportive measures - increase feeds, decongestant meds, pain relief, coaxing tempting titbits of food etc to try and head off the worst.
But this time I wanted to see what his body could do for itself. We're making progress towards weaning off the tube and a major factor in that is being able to cope with bugs without needing extra tube feeds.

So the first day he seemed okay, just congested but happy enough but by that night we were up with him retching due to all the mucus in his system.
Even though none of the kids can actually vomit properly any more after their reflux surgery there's nothing quite like that distinctive retch in the dark of the night to get a parent running a sub whatever second sprint to a kid's room!

T's lucky in a warped way, with his tube we can vent the air out of his tummy which is making him feel horrible - and along with it a certain amount of the mucus he's swallowed can be removed.
So we fairly quickly settled him and went back to bed.

The next night we were up again - to the dreaded sounds of croup. The poor kid was working reasonably hard to catch his breath between coughing and crouping and wouldn't lie down. But the good old trick of extra pillows and lots of calming reassurance worked and he eventually settled and went back to sleep after a round of cold meds and some ibuprophen. I was thrown back into the "Does he need help? What supportive measures do I put in now since he's not holding his own? Why can't this be 'just a cold' for once?" dilemma.

Apart from the fact that W complained he could hear T coming down the hallway that morning as his breathing was so loud he did seem to be managing that day.

The biggest problem with croup in a tubie is that all the pressure from the tummy muscles being used in breathing can actually send the feed backwards - and on occasion with T he's been bad enough to be triggering alarms on the pump because it reads the backwards flow as a blockage!
But he was still eating and drinking reasonably so I decided it was time to play chicken with the cold bug.

4 days into the 'cold' he was still running temps, sleeping at times and propped up on cold and other meds but nothing prescribed, no trip to a doctor and no increased feeds.

He saw his paed on day 6 for a routine check and she declared his chest clear so all the gunk has to be restricted to his nose. His weight was also static but he had been weighed only 2 weeks prior.

We're now around the 9 day mark on this cold. He's still really congested, mood's a bit fragile but through all of this we've scored some firsts -
 - He didn't need to see a doc specifically for any effects of this bug.
 - He hasn't needed antibiotics at all - he often gets a secondary infection round his tube site when he gets sick but that hasn't happened either!
 - He hasn't significantly dropped off in his eating or drinking - this is a major first!
 - and because of the continued drinking and eating we haven't had to increase his feeds at all.
 - while he hasn't gained weight he hasn't lost any during this bug either - a major major first!!

So while he's still sick, got sicker than you'd expect from a 6 1/2 year old with 'just a cold' he's come a long way and made some major strides - one day, maybe, we really will have 'just a cold' in the household!

But in the meantime, this is another example of why people sharing bugs drive me crazy. It may well be just a cold to your kid but we're at day 10 and counting with a kid who is still unwell. People blow off the effects of a common illness but to kids already struggling it can really tip them over the edge.

So spare a thought next time you are coughing away - do others really need that bug - and do you know exactly who you might be spreading it to?
It won't be just the kid who gets it either - kids are generous...I 'm coming out the end of it too!

A Month for every Cause

It seems these days it's hard to find a month which isn't awareness month for something, usually they double, triple and quadruple up.

I remember a time when it was unusual to have an awareness month for anything and it really meant something.
Some conditions don't have big international organisations to co-ordinate World blah Day, week or month.
And so they get lost in the wash of Breast Cancer Awareness, things for prostate cancer, even arthritis or blindness. The competition for a ribbon colour has gone crazy as well - different shades of blue for different conditions for instance.

There is one awareness month which largely relies on word of mouth. It doesn't have an international organisation, it doesn't have a snazzy ribbon you can wear with pride, it doesn't sell specially coloured everyday objects in the supermarket to fund raise for research, support or awareness.
I don't know if we even mark it here or if it's much more of an American thing but, in the US at least, November is Prematurity Awareness Month. Unofficially purple has become the colour for prematurity. There isn't a ribbon as such but a number of people have a specially made pendant with a heart shape on it. It's the Preemie Purple Heart. It's not a New Zealand symbolism that we come to easily and is very militaristic. Of course, here in New Zealand we also don't award Purple Hearts as the American military do. They award it for bravery and injuries received.

While it's not our imagery here it's incredibly appropriate.

Prematurity leaves babies fighting for survival.
Prematurity leaves babies fighting way beyond their birth and infancy.
And Prematurity leaves scars, battle wounds if you will.

Sometimes those scars are visible surgical scars, other times it's minute brain damage, tiny changes which play havoc with their development, some times it's the re-wiring of the sensory system or damage to the child's lungs which they carry for ever. None of those can be seen by the naked eye but they are there nonetheless.

Prematurity is a common and wide-ranging issue. The best stats I could find say that globally between 10 -12% of all births are pre-term - that is before 37 completed weeks of pregnancy.
For New Zealand - we're doing better than the global average - we have between 6 - 8 % of all births each year are pre-term. We are also ahead of the pack generally in terms of survival rates as well.
But it has to be remembered that even at the 32 - 34 weeks gestational age the survival rate is around 95%.
Of course that's variable up or down depending on all sorts of things - complications in the pregnancy, size of the baby, complications in delivery and so on. But the fact remains that around 5% of babies born 6-8 weeks early won't come home with their parents.

And the gestational age where we've seeing the biggest rise in premature births is the 32 - 36 weeker bracket.

There's a lot of evidence and information out there about the battles, disabilities and difficulties micro and even a little later prem babies have. It's not been interesting enough until relatively recently to research the effects of prematurity on moderately and late pre-term babies.

We were all told to take them home and treat them like a full termer, catch up by 2 years old, no lasting effects and so on.

The evidence is mounting that no prematurity is really benign - some kids are simply lucky. Some of those 'lucky' kids actually have damage they simply managed to function round and no one would know it was there until tests were done for some completely different reason.

But here are some stats I've found on the 32 - 36 weeker cohort. Much of this has come from research done in the last few years at National Women's Hospital in Auckland so it's pretty up to date - and New Zealand relevant.

If you are new to the prem baby/child game then think first before you read this.
If you have a late pre-term baby/child think how you are placed first before reading this.
If all you know about prem babies is that they are cute miniatures of full term babies (as I did, once a blissful moon ago) then please do read on!
Prematurity is not an excuse - it's a reason.

32 to 36 weekers (and that's measured to 36 weeks and 6 days) are 3 times more likely than full termers to have CP diagnosed by aged of 5 1/2 years.

They are also 3 times more likely to have a developmental delay diagnosed by 5 1/2 years.

They are 1.6 times more likely to have an intellectual disability.

They are 5 times more likely to have ADHD.

Their maths and reading scores as assessed by teachers is worse than full termers at Year 2 level.

Their participation in Special Education supports is higher in early levels of school.

They are 1.5 times more likely to be blind, deaf or have a seizure disorder.

They have decreased IQ scores.

Schizophrenia, psychological developmental disorder, behavioural and emotional problems are more common - in fact 19 - 21% of 34 - 36 weekers had clinically significant behaviour problems diagnosed by 8 years old. This statistic is similar to both the 31 - 34 weeker cohort and the 25 - 30 weeker cohort.
It is double the statistic for full term children.

High blood pressure, high cholesterol and insulin resistance in late childhood/early teens is more likely in late pre-term children. This appears to be related to abnormal growth patterns in infancy.
The first two years of life are the prime catch up time for late pre-termers and yet they are two times more likely to be underweight, stunted in their growth or even suffer wasting.

What the researchers don't say is that particular stat is due to the huge numbers who have feeding problems - even beyond the typical prem baby issues with tiring, poor suck etc.
Reflux is endemic in the prem population which can lead to feeding problems, sensory issues can lead to gagging, texture issues, oral sensitivity and finally food aversion.
Again when the incidence of feeding problems in late pre-termers is looked at, if it persists beyond a few months old then it is often as severe, persistent, serious and needing as intensive treatment as it would for a micro-prem.

A large reason for these impacts is that their system is immature, unprepared for the sensory assaults of light, sound and being handled. But also a significant reason is that in those last 6 weeks of pregnancy critical brain development is taking place. Btween 34 and 40 weeks gestation the cortical volume of the brain increases by 50% and the cerebellar development increases by 25%. In late pre-term children there is evidence of the white matter of the brain being decreased in volume even without evidence of a brain injury so this important development is being disrupted by the premature birth.
That's why our kids are 'wired differently'.

Now all that sounds horribly depressing - and it is.
Our kids are never really out of the woods because with the high blood pressure etc they re at much higher risk of chronic health problems as adults. Some kids appear to skate through their pre-school and even early school years and then the organisational, the executive function demands increase and the skills just aren't there and things start to fall to pieces, leaving the parents wondering where they've gone wrong because they thought they'd escaped the evil clutches of prematurity.

But all is not lost.
Those who read this blog regularly know that despite it all my boys are doing fairly well in their schoolwork, they are happy, exploring and living life as best they can.
They have some huge challenges but with our support are rising to it.
The trick is - knowledge is power.
Knowing what the risk factors are and employing watchful waiting. Don't expect every part of the preemie alphabet soup to befall your child, but, if they start to show issues then jump for help sooner rather than later.
Know how to find support and make sure you get it.

It's a roller coaster ride with many twists and turns, raising a premature child - but remember, the highs are there right along with the lows and I find, knowing how deep the lows can be also makes the highs all the more sweeter.

"Barring Disaster" or life is what happens when you are making other plans

Life changes a lot after you have kids - we all know friends we lost contact with after our lives changed with the advent of kids and they didn't have any. But parenting on the sharp end is more like an extreme sport - and so the gaps are bigger.

I often reply to invitations with "Love to come - barring disaster" and I'm sure people think I'm just a total recluse.

Actually I'm sure many have given up trying to make contact at all.

But the simple fact is that baby sitting is hard to find/impossible, stuff keeps going wrong at the last minute and actually I'm often just plain tired.

I'm often afraid if I actually escaped the house I'd simply fall asleep at the table.
Some days the reciprocal nature of normal conversation is beyond me.
Others talk about schools, play dates, running from event to event with the kids while my mind is running over things like - if T had 170 ml in a morning feed but only drank 40 ml in the afternoon that means he needs x extra mls on top of his 650ml overnight, um when am I getting to bed again and how fast dare I run it so I can get to bed no later than 1am?
Not too scintillating I'm sure you'll agree!
And that's when my mind's not doing the horrible realisation I haven't washed out the feed containers today because I got side-tracked so I'll have a stack to do and probably need sterilizing now or calculating when the younger two last had a weigh-in and I'd better book them in soon and when do I need to call the chemist to organise repeats.

T had his Nissen Fundoplication and gastrostomy placement in Feb '09. Since then his needs have sky rocketed.

As a result P and I have great difficulty getting out together without the kids. In fact I can count the times on the fingers of one hand - there have only been 4. And that's including my trip on my own to England for my sister's wedding.

I saw a brilliant blog post a while back - she's a mother of a special needs medically fragile kid and while Thomas isn't anywhere as high needs as her daughter is he's definitely had his moments!


The bit that really spoke to me was this -" But as much as I love my dear friends, it is a huge effort to get out and do something with them. Even just the smallest of outings.  It involves much planning and scheduling. And it takes physical and mental effort and energy, and I really just don't have any to spare.  When I am presented with a choice of "I could go get a pedicure with a friend, or I could go to bed an hour early" - I fully admit that I will choose the latter almost every time.  Because even if I was not chronically sleep-deprived, when I get together with a friend, what is there to talk about? "

When I've had a week of 1 am bedtimes, juggling feeds and trips out to appointments, got N behaving like a twat during the day because he's not eating yet again and I had the choice of a night out or P doing the night feed for me and getting to bed early, ideally with the option of a sleep in in the morning - what am I going to choose?

"Oh, you'll feel so much better to get out and take a break" - not as much as I would after an early night!

"The world won't end if you aren't at home doing it all" - no but even P has difficulties on a regular basis getting T to let him hook him up for his feed and despite his best efforts he has other jobs to do so I get home to a trail of half done jobs which take a while to sort back out again.

I don't think I'm irreplaceable but more that often the work load I return to makes it feel like it's not worth the planning beforehand and the sort out afterwards.

But as the quote from the other blog said, it's the mental effort and energy too - and that is just being spent on getting through the day/night often.

When T came through his last surgery with a dramatic improvement I decided it was time to get a needs assessment done to see about respite time. It was a nice validation in a way because they said with the workload he incurs I qualify for 104 DAYS of carer respite time. That's at a time they are cutting back and that kind of allocation seems to be unheard of in special needs parent circles here.
Not like I can use it all - or find anyone to do the respite time for me - but it's nice to have the work recognised.
Our GP just the other day said she doesn't know how I do it all and she'd have checked herself into a institution long ago if it were her. The kids' paed has said that caring for these kids is more than a full time job and she has no idea how I do it and even a modicum of work.

I do it because they are my kids, because there is no other choice.

But the end result is pretty much chronic sleep deprivation which has lasted about 6 1/2 years now, endless paperwork, fights, tactical planning, appointments plus of course - just keeping the kids alive!

Having kids is tiring and busy.
So is running a household.
So is homeschooling.

But here's the reason why I'm so spent, why I'd love to come out with you, return your call, actually remember the things we were going to do - but just never get there.

I get up about 7am - not bad so far. Thankfully P's usually done some basic household chores by then because he gets up with T who wakes at some ungodly hour. We're still not sure when he wakes as he's always well and truly with it when he comes and stands beside P waiting for the alarm at 6am!

But by 9am I've spent -  35 minutes making up N's formula for the day and making him drink his first glassful;

 - 20 odd minutes washing up T's feed containers, syringes and tubing from the night before and making his formula for the day and measuring it out;

I've also refereed at least 2 fights in the 30 mins N's been up because it takes time for his ADHD meds to kick in and he can't be medicated 24 hours a day.

That's about an hour of my 2 hours awake done for. That's in addition to sorting washing, making sure the kids eat, tidying up after breakfast, feeding and dressing myself etc - all the normal stuff.

By 10am I've spent  - another 35 minutes supervising T's tube feed and quite possibly venting him at the end of the feed;

 - between 5 and 10 minutes cleaning and applying cream if needed to T's tube site;

 - another 15 mins cleaning feed containers, syringes and tubing again after the feed.

Venting usually means attaching an open syringe (a big plastic syringe but without the plunger, the pushy part, attached) to his extension tube and allowing air to come up and out of his tummy and relieving pressure. We didn't need to do that very often before but with the increased burping lately it makes him more comfortable.
If we have to do that then often a little stomach contents comes back up through the tubing and possibly into the syringe which has to be returned gently to his stomach and then all the equipment treated like it's been vomited on - as in effect it has been - and cleaned very carefully.

So that's about that whole hour between 9 and 10 gone.

In between I'm teaching the kids, sorting disagreements and trying to hang the washing without World War 7 billion breaking out because the kids are like any other self-respecting bunch of kids and if the teacher has left the room of course they'll do anything but their work!

Through the day at about 1 1/2 to 2 hourly intervals I spend about 30 mins trying to coax/remind/nag N into actually drinking a glassful of his formula. Sometimes he downs it without difficulty and it only takes a couple of minutes out of that 2 hour window. Other times, like today he drops it.
That results in an extensive dry up, stain management, spray the floor and spray with a different spray once it's dried effort. Milk based drinks in wool carpets are not a good mix.

These days I spend about 30 minutes in the afternoon luring T into drinking some formula in the afternoon.
It may sound like a long time but you have to remember that his morning feed plus clean-up takes at least 45 minutes so by getting him to drink it instead of tubing it I am winning on this one plus it's just another step closer to tube-free life.

Over the day I probably spend about 3 hours just getting N to drink his formula - never mind eat anything.

You'd think that at least the kids are old enough that bedtime would be simpler...

T needs help drying round his tube site after a shower in the evening and checking if he needs any cream, either for granulation (extra skin growth which leads to a bit of an ooze and so what we call 'the crusties') or for early signs of infection which is often caused by the moisture/ooze caused by the granulation.
So that accounts for another 5 minutes - usually around the build up to dinner time so thankfully now P works from home he pops up, deals to that and goes back to 'work'.

The med round the kids require before bed also takes time.
By the time you've warmed the feed, flushed the tube and hooked T up to his night feed, mixed N's med for constipation (caused by his lack of solid food and shonky diet) with juice and given him his night medicine there goes another 20 mins.

That's in addition to night chats, sorting beds, tucking them in and all the normal stuff that everyone else does.

Of course I do try to do the housework, cook the meals, bake for the family including allergen-friendly foods for T and all that normal stuff.
The older two do music lessons as well, W has soccer in season and the older two but now it's the younger two have swimming lessons so I do have a stint as a 'mum-bus' as well.

N's meds wear off coming up to 12 noon and again coming up to 3pm so in the gap of them wearing off and the next dose kicking in he does need watching more carefully - he comes up with the most hair-brained schemes anyway but when he's hyperactive and impulsive you just never know what's going to happen. If he's not eating then he has a hair-trigger temper too and certainly doesn't think through the consequences of shoving a sibling even if they are close to a ranch slider...
As I say he can't be medicated 24 hours a day...

But my day doesn't stop there.

My night stretches on and on -
If T's eaten a good meal and feeling very full then his feed start may be a little delayed or run more slowly,
If we've been out somewhere and so his feed starts late,
If things are running behind that evening and so he's late for bed,
If he hasn't drunk so much formula over the afternoon - these are all reasons why my night could easily shift from a 12:30am bedtime to a 1am bedtime.

Depending on how hard the day has been with 'persuading' N to drink or how well he's been eating and so behaving I can find it hard to sleep anyway when I do finally tumble into bed.
Even if I get to bed by 12:30 it's often 1 am before I actually sleep. If getting to bed is 1am then it might be a bit quicker to sleep but that varies.

And so I finally get to rest and it seems all too soon that T arrives by my bedside (if I'm lucky enough to sleep that long) at 7am to tell me "It's up time Mummy!"

Some days, especially in winter, when I draw the curtains round the house to keep the warmth in, the pull of a bed in the semi-gloom is almost irresistible.
There are days when my eyes feel gritty because I'm tired - by about lunchtime.
By Friday I'm almost certainly in that state.

All of us who are parents remember that awful state of sleep deprivation with a newborn where you find you are unloading the dishwasher and putting the clean dishes in the fridge, when you drive somewhere and you only vaguely remember the trip, when you are sure you are actually micro-napping and missed something a kid said only, that's okay because if it's N he'll tell you another 10 times anyway.

I hang out for my Friday nights when P often does T's feed for me and whenever possible childwrangles on Sat morning so I get to sleep in. Some days that's even 9am!
Often but not always P does one of T's feed mid week for me too but that depends on rehearsal schedules and general tiredness of us both. There's no point in us both being zombies - and he has to earn the money!

So if I forget to return your call, find I'm just too tired to go out, have some disaster befall us, don't quite get to Facebook/email that day or week (because in the fog I've forgotten I even needed to send the email until I'm dropping off around 1am!) then it's not personal.
Heck I've been meaning to call T's Community nurse about a spare feeding tube for the past month!
Email actually works for me as does the internet.

It's my lifeline to the rest of the world and it's waiting whatever hour of the day or night.

But whatever happens, please don't give up on me totally.
Please don't stop inviting me to things.
It does help to know there are people out there, with other lives and in another world I look at and hope to re-join someday.

But do bear with me - this has to improve some day!

And so, I will post this and go and do some of those jobs which don't get done during the daylight hours as I have a good hour at least before bed tonight - T was full of air after a good dinner...

Fight the Good Fight

It's been a while, quite a while since I last posted and in part that's because I kept hoping to have good news to post.
However, as typical round here things are never as they seem and in the end things are either not resolved to any conclusion - good or otherwise, or wind up in a bigger mess than ever before!

There's a lot going on for W - stuff I can't get into here and now because there are a lot of things to evolve first but needless to say it's going to be a David and Goliath fight but one David is going to win.

We're going to win for a couple of reasons - 1 - because the relevant government sector has dropped the ball so incredibly badly that there is no way the decision made can stand on the current basis (and now we have a much better idea of exactly what they are looking for we can re-write the information in such a way as to tick all their boxes!) but - 2 - because it's our child we're fighting for and his future. There is no greater incentive, no greater investment, no greater motivation.
I will not and can not just throw away everything we've strived for over the years - or allow anyone else to do that.
But it's been really intense and emotional and required a huge amount of head down research, emails, planning and the occasional meeting.

I can't remember if I've written about N and where he's at lately but things are going from difficult to messy with him too.
We realised last year that he needs transition time from being homeschooled before he goes to a secondary school - that will happen at the start of 2014 so we don't really have that long to sort ourselves out.
However we also realised that needing to drink between 1.5 Litres to 2 Litres of liquid a day really isn't compatible with school. Especially when he needs it reasonably cool and it's Ensure (a reconstituted powder mixed with water).
The paed agreed that his liquid intake and school wasn't going to work and we'd already tried mixing the Ensure with milk to boost the calories and decrease the volumes to no avail - try constipation to the point of a bleeding anal fissure for size.

So we tried to halve the volumes and limit it to out of school hours. While that was a sheer and unmitigated failure with 3 of the hardest weeks I have experienced in a very long time it did show us very clearly a few things - that he needs the regular 'doses' of calorie intake or his behaviour and school work deteriorate beyond all comprehension, that he really really needs all those calories as he lost 1.5kg in 3 weeks and didn't increase his eating to compensate, and the fights we had over getting only 750 ml in outside school hours was an impossible task and meant his stomach was so overloaded he absolutely wouldn't eat.

The day we met with the paed and all declared the experiment an abject failure and she agreed school was looking nigh on impossible unless we juggled something was also the day we got told by the relevant govt agency they had declined W for what were incorrect (and things we had never stated) reasons.

To say there were tears shed would be understatement.

It felt like the world was caving in and that we had totally lost the battle for both the boys.

Just as I was picking myself up a little from all of that it was time for the younger two's monthly weigh-in and I discovered that T hadn't gained in nearly 3 months and the GP wanted his feeds INCREASED.
I'd just nutted out a plan to get him free of day feeds by Christmas and was looking forward greatly to freedom from the tyranny of watching the clock, remembering when best to hook him up to keep energy levels up nut not compromise any chances of a decent meal, cleaning tubing, feed containers etc. Never mind the fact that once we jump the day feed hurdle any decreases then come off the night feed which means I get to actually sleep.

And so, devastated once again, I did as I was told and increased his feeds. She'd said to do it even just for 2 weeks. So, because I was so desperately keen to get him back on track (and very mindful of the fact we had a dietitian appointment in about a month and she'd be on my back about not decreasing) I took him back after only 2 weeks.

SUCCESS! A 500g gain in two weeks. That wasn't just because of an extra 50ml of formula a day. It was because I was concentrating and making sure I offered food whenever he seems to possibly be interested.
It was because I wasn't struggling with a tearful, tantrum-throwing, headachy, calorie-deficit stricken N.
An N who really couldn't be left unattended for long.
An N who left himself and us all drained and completely spent by the end of the day.
An N who had the whole family treading on egg-shells in fear of provoking the next melt down which would either result in screaming, swearing and crying for the next 30 mins or a violent attack launched on someone and then followed by the screaming, swearing and crying for the next 30 mins.

I felt dreadful. By focusing closely on one kid another had suffered. I was juggling and had dropped a ball - significantly.
I know all parents juggle all the time, that one kid requires an intense focus for a while and another has to take the back seat. But in this case the juggling act is such high stakes that you can't afford to juggle and drop.
At least it wasn't quite as bad as the last big push on N's eating when T managed to lose 500g!

Add to this he sneaking, fearful suspicion that T's dreaded 'gloopies' may be re-appearing.
Complaints of sore tummies, feeling full fast and lots of burping just add to the sense of urgency to get him off the tube. I never want to see him in as much pain as he was back then.
I also don't know how often you can re-site a tube - or how often our surgeon would be prepared to do it!
How many holes can you poke in a stomach anyway?

At the moment he seems in reasonable spirits although fear clutched it's cold hand around my heart about a week ago when he was so uncomfortable during his feed he started retching.
Night feeds don't appear to be causing problems - probably because they are run a little slower but also because he's asleep and so less aware of how he's feeling.

But in light of this we're now working to get T to drink some of his formula orally.
In life BG (Before Gloopies) he was drinking around 200 mls a day and not having day feeds. The ay feeds only started because of volumes, calorie deficits during the day and lack of solid food and later puree only restrictions.
So we're slowly cranking that back up again and he's been drinking some Neocate each afternoon for the past week. We're now up to 130 mls!
So keep your fingers crossed for a weight gain this month and so we can decrease the the tubed volumes which are currently cruising at 170mls - yes that's right down to ONE  day feed!
In this process I'm hoping to get the oral volumes to 200 mls and once the day tube feed gets below 150 mls we'll chuck the extra into his night feed. So I'll be up for some horribly long nights again but hopefully only for a couple of months and then we're back onto the tube-free life expectation track!
That's all assuming the gloopies don't de-rail it with their evil presence. It was about a year from first tube placement before they started off, this time it's only 6 months since the re-siting operation. The whole prospect terrifies me to be absolutely honest and just makes me want to sit and cry.

So if I've been 'absent', quiet, short-tempered and grumpy, anti-social and generally a crap friend and missed events etc then I'm sorry but now you know why!

The constant juggle turned out to be performed with live grenades and ended in the inevitable fashion.
Darling N pointed out today "Your hair is going grey Mummy"
Yes darling there's no wonder - and actually it's going white - totally skipping the grey.
I must have dropped that ball somewhere too.

In celebration of the end of the Football season - or two kids, one car, in the dark with nowhere to go!

Just a walk on the lighter side today -

I always feel like a bad mother when I'm relieved the football season is over or practice is cancelled.
W is always so disappointed and I do try to stifle my relief, really I do.
But it absolutely is relief - and this is why.

In the past years W has had football practice on a Sunday afternoon. P takes him to practice and usually N tags along. W races off to be with his mates and has a good hour and P and N get some father/son time on the adjacent playground.
Back in the really good old days T would have an afternoon nap and I'd get some total down time. More recently it meant that T and I get a good stretch of mother/son time with no interruptions of 'total emergencies' from N. It's astounding how many emergencies we can have a day according to N...
Sounds lovely right?

It was.

But this year they changed the day - to a Tuesday.

Anyone who has known me for a while knows I hate Tuesdays. I've hated them since I was 14 at least.
If something can go horribly wrong it will be a Tuesday, a day which is grotty all out of proportion - it'll be a Tuesday. When I was 14 Tuesdays were my black hole day because we had a double maths class.
I always struggled with maths so a double class would be bad enough but the evil timetable fairies had it totally in for me. We had a class second thing and then last thing of the day.
That's bad enough to split the torment but no, there's more...
We had a total fiend as a maths teacher and so he'd set homework after the first class and expect it to be done by the next class at the end of the day. Someone obviously forgot to teach this teacher the meaning of the home part of homework. So Tuesdays were a day to dread all that year.

Later in my school career Tuesdays were when we had a double class of Art History with what has to have been the most boring teacher in the school. Yet again the evil timetable fairies had it in for me because it wasn't consecutive classes but divided by lunch. It was amazing the number of students who magically got ill in the lunch break. I got through it because at least I had a free class last of all and got to go home straight after the last Art History lesson.

At University I had classes from 5:30 - 6:30pm at least 2 years in a row, not because of the classes I chose to take but because those were the tutorials I was assigned to. In the winter it was dark and cold and I was starving by the time I got home.

It was absolutely predictable that when the boys each needed their nissens, major surgery, the day of the month the surgeon operated at the relevant  hospital was - a Tuesday.

And so when they said this year it was a choice between the usual Sunday afternoon or Tuesday evening I just knew what was going to happen. Just to make life truly wonderful they decided on 6:30 - 7:30pm for a practice time. This meant I'd be leaving the house around 3pm and not returning until about 8pm.

The older boys have swimming on a Tuesday afternoon - in town. They finish a bit after 5pm and so there was no way in the world I was going to get through rush hour traffic back to our place, feed the kids and turn around to football practice which was a good 20 mins from home.
Where's P in this timetabling nightmare? With a choir which has ALWAYS practiced on - Tuesday evenings.

And so Tuesdays during the football season this year had me hoping and praying for a text message saying practice was off. Every second week they were on the artifical turf so barring snow (which did actually happen one week - the week they were on the grass so likely to be cancelled anyway!) it was certain to be on.

Every Tuesday would see me making a dinner I could transport in the car, re-heat at my parents' house, feed the kids in the 50 mins I had between swimming ending and having to leave to go to football practice.


But W's practice was only an hour long so there wasn't time to drop him off, go home and come back again. There would have been no point anyway as P was out. The other parents live close to the field so they could drop and run. I wound up sitting in a car, with two grumpy kids, in the dark and simply getting colder and colder by the moment.

Many evenings ran something like this -
We'd arrive about 5 minutes early.
The second W had left the car N or T would ask how long it was until W finished. I'd reply "He hasn't even started yet!".
I'd hook T up for his night time tube feed and the boys would spend a 'peaceful' 5 minutes planning how to annoy each other for the next 75 minutes - as the practice never finished on time - and yes, I mean never - I was a clock watcher!


They would continue to alternate asking when W would be finished - at roughly 30 second intervals.

Last week, thankfully the last practice of the season, N discovered a new method of annoying the heck out of T. T had had a hard day and he was tired. He had already announced he wanted to sleep in the car this evening. By some miracle we had actually arrived 10 minutes early this week.
And so once W had left and I'd hooked T up to his feed and persuaded him, if he was going to go to sleep that it'd best best if I strapped him in now so as not to wake him doing it later, N started his new trick.

He started to flick his overhead light on and off over and over and over again.
T asked him nicely to stop.
N kept on flicking.
I asked him to stop.
N kept on flicking.
T screamed at him to stop.
N kept on flicking.
T screamed more and I asked N firmly to stop.
N kept on flicking.
By now T's literally working up a sweat and is in tears because all he wants is to sleep but N keeps on flicking.
In the end I tell him he's now lost 10 minutes computer time from the next day, yes that includes watching dvds on an old laptop he uses and if he doesn't want to lose more he will stop flicking the light on and off right now!
N stops flicking.

Peace reigns - for about 40 seconds.
T starts humming, gently and quietly at first. It's not really too intrusive and so everyone seems to cope with it. But gradually it gets louder. It's seriously not annoying but N isn't going to let this pass - after all he couldn't flick the light so why should T be allowed to hum? The difference in annoyance levels totally escapes N.

As so, going from 0 to 100 in typical N style he screams at T to stop humming - a hum which is loud enough to be aware of but not much else.
T stops, for a few seconds. A thoughtful look passes across his face and I sit, waiting for what gem is going to come next.
"Hmm" says T, tapping his chin with his finger pensively, "What do I need??? Hmm, oh yeah - a microphone!"
This last word is delivered at full volume.
An evil grin spreads over T's face as N erupts into predictable screams, yells, threats and a hail of whatever missiles he can find at the back of the car to throw towards T.

And through it all T is heard to ask "How long til W's finished Mummy?" "Over an hour!" I say through gritted teeth.

And so, I'm not really a bad mother. Honestly I'm not.
But the relief that P and W are currently at the end of season function is flowing very strongly today.

The DHAC People - or try walking a mile WITH me

This posting is in tribute to all those 'wonderful' people who DHAC (Don't Have A Clue), those who have been able to live in blissful ignorance and want to share their ignorance of the harder turns life can take with others!

I have been the unwilling recipient of many a thoughtless, stupid or plain mean comment over the years with the kids.

They range from the idiot who told me I was lucky to have a baby in the NICU as at least I had built in baby sitting - when all I was desperate for was to take my baby home and not walk out of that building once more without him;

The woman on the bus who asked what I'd done wrong to make my baby so small (referring to a still not due yet W) - I told her I washed him and he shrank!

The wonderful person who told me "You do the crime you do the time" when I yawned and said I was tired from 2am feeds - T was 10 months old and we were setting alarms to feed him as per paed instructions.

The person who tells me how much their kid eats in a single sitting and how much they weigh now and then asks, knowing our battles with all the kids, says they bet their kid is bigger than mine and what does x weigh now?

The 'helpful' person on the street who tells me I can't really be a mother of my baby as I clearly have no breast milk for him;

The person who tells me it's lucky my child has developmental delays because they can stay a baby for that much longer. The other variant is being lucky they are tiny because they stay a baby for longer - not so much fun when you are putting your 6 month old into newborn clothes and you are sooooo sick of stretch'n'grows!

The health-fixated passerby doing their bit for child obesity and tells me I shouldn't be giving my child a lollipop or a small packet of chippies.

This one happened on 3 separate occasions all to T - the lollipop was after a major blood draw and was an incredibly well earnt reward, the chippies on one occasion was the first solid food he'd eaten in 24 hours and was tentatively eating his second chip and on hearing the 'health announcement' handed me the packet back and refused to eat anything more - I nearly cried.
The third was one afternoon when he'd actually asked for them! It was only about 7 months after his surgery and I happily bought them. I gave her an eyeful of tube and said we were happy he could eat anything.

The woman in the supermarket who took T to task for fiddling 'down there', declaring none of her children or grandkids would have dared to - it wasn't long after his long tube had been removed and switched for his button recently and he was in the habit of holding it and protecting himself from it pulling. If only I'd thought to explain, show her his scar riddled tummy and button.

The innumerable people who have seen fit to pass loudly audible judgement on the temperament and manners of my child and/or my parenting skills as I have a child in full autistic meltdown, running through the supermarket yelling about anything and everything which comes into his head and will not stop for anything or any other child behaviour which doesn't fit the socially accepted 'norm'.

The people who can't understand that a child is going to be extremely distressed when their feeds have been juggled to fit in with an event, everything is running late, they are almost overhungry now - and then we discover there's nothing allergen-free/suitable to eat.

The people who ask and seem oh-so-surprised when you explain that no, W hasn't 'outgrown' his Asperger's or N his ADHD. In fact so many kids don't 'out-grow' their prematurity too - a premature baby grows into a premature child in so many cases.

the people who declare "children didn't behave like that in our day" - no, they didn't. They were in institutions or dead.

And that brings me beautifully to today's excellent example of a DHAC who simply has to prove it in the most obnoxious way possible - the person who stops you as your tube-fed child, still attached to a pump, runs off after his brothers and says that kids like that ought to be in hospital and it would have been kinder just to let him die.

I'm sure many of my readers have plenty of these comments of their own they've collected over the years and have suffered the same pain. Do feel free to add them on the comments section! :-)

But why do the comments hurt? Quite apart from the obvious with the latest one - how can you suggest my beautiful, life-filled child would be better dead? Why do they hurt?
In part I think it's because they are simply destined to hurt with their thoughtlessness.
Part is because you see what you don't have any more or never had to start with.
Part is sheer and utter jealousy on our parts - wouldn't it be wonderful to live life not knowing about all of these issues?
Without the worry, concern, fear?
Wouldn't it be lovely to walk down the street and see a kid eating a packet of chippies and think about something other than how many calories, nutrients and any possible spin-offs like drinking extra formula there might be in it?
To watch a child run, climb and jump off something and not know and think about what a complex series of motor skills that requires - all at the same time scanning for hazards for your child's inevitable fall because they haven't mastered the motor skills their peers have but they want to do it anyway.

This is one of those many Face Book statuses which do the rounds but is very very appropriate here -

For all the parents who had to wait longer to hear a first word,
Who spent more time in doctors offices with their child than on playdates,
Who endure countless bad days and the stares from other people,
For the parents whose child's first friend was their therapist,
For all the parents who face special needs every day.
We salute you.


But more than that I salute the children themselves - those who have never known any other life,
Those who battle on to do as their peers do even though they are a million miles behind them,
Those struggle with ordinary every day skills such as eating - or breathing!
Those who keep smiling through it all - and keep making it worth it for us to go out there every day and fight for them.
They are the true heroes.